Whose Job Is It?: Parents' Concerns About the Needs of Their Children with Language Problems

Whose job is it? Parents concerns 1

In press The Journal of Special Education 2004

Whose job is it? Parents’ concerns about the needs of their children with language

problems

Geoff Lindsay,

University of Warwick,

Coventry, England;

Julie E. Dockrell,

Institute of Education, University of London,

London, England.

Acknowledgements

This project was funded by the Gatsby Charitable Foundation. We are grateful to

Claire Hall and Rebecca Jeanes for carrying out the interviews and Linda Galpert for

support in coding and analysing the data. The project has been continually supported

by the children, parents and constructive steering group.

Correspondence

Professor Geoff Lindsay, Centre for Educational Development, Appraisal and

Research, University of Warwick, Coventry CV4 7AL, England.

E-mail: [email protected]


Abstract

This study examined the perspectives of parents of children with specific speech and

language difficulties (SSLD) in the UK and described the issues they raised when

considering provision to meet their children's needs. The study utilised a mixed

methods approach. Data from interviews were analyzed using a computer-based

qualitative interview analysis method (ATLAS/ti), with reference to evidence from a

parent-completed rating scale and assessments of the children’s language and

educational development. The issues generated by the analyses were considered in

relation to whether the child attended mainstream or special school. Results are

discussed in the context of current educational policies for inclusive education and

parental participation in meeting children’s educational and social needs.


Whose job is it? Parents’ concerns about the needs of their children with language

problems.

Language is a cornerstone of early development. When a child’s early

language skills are compromised because of developmental difficulties parenting

patterns and educational provision are challenged. How parents and professionals

work together to support the development of children with language difficulties is of

significant concern. The current study addressed these issues by considering the

perspectives of the parents of children with specific speech and language difficulties

(SSLD). These are children with a primary language problem, one that is not a result

of other intellectual, sensory or physical difficulties; these children are often referred

to as experiencing specific language impairment (Bishop, 1997; Leonard, 1998).

The involvement of parents in the education of children with disabilities in the

United Kingdom is considered not only a right, but also a necessary component of the

delivery of effective and efficient provision (Department for Education and

Employment 1997, 1998, 2000). It is also a legal requirement under the Education Act

1996, legislation that is comparable to that in the United States, the most recent being

the 1997 Amendments to the Individuals with Disabilities Education Act (IDEA '97).

Guidance is provided by a Code of Practice (Department for Education and Skills,

2001).

Parental involvement covers many aspects including the assessment process,

where parents’ knowledge of their child is an important source of information;

decision-making, where parents have a right to receive full information, call their own

experts, and express a preference for provision; and educational intervention to which

parents may contribute. Parents also provide an important source of information on the

working of the systems designed to meet their child’s needs. Although such


information concerns an individual child’s pattern of experiences, patterns across

individuals can be analyzed and the results generalized to wider groups. As such

parents have an important role in closing the audit loop on the system’s effectiveness.

As provision for children with disabilities is being made increasingly in

inclusive settings in both the US and the UK, it is important to understand parents’

perspectives on the benefits and drawbacks of this approach. Parents of children with

disabilities and parents of typically developing children have mainly positive attitudes

to the inclusion of children with disabilities in mainstream provision (Bennettt, Deluca

& Bruns, 1997; Duhaney & Salend, 2000; Galant & Hanline, 1993; Guralnick, 1994;

Guralnick, Connor & Hammond, 1995; Miller et al., 1992). Parents who are

supportive of inclusive policies consider that this means acceptance, belonging,

“fitting-in”, not being different, making friends locally, and participating in local

community activities (Erwin & Soodak, 1995; Hewson & Sisson, 1996; Petley 1994;

Schwartz, Staub, Galluci, & Peck, 1995). Parents who support inclusion consider that

children with disabilities develop better social skills, academic abilities and motivation

from being alongside their typically developing peers who act as role models

(Guralnick et al., 1995; Palmer, Fuller, Arora & Nelson, 2001; Ryndak, Downing,

Lilly, & Morrison, 1995). Many parents give greater importance to their child being

accepted socially and as part of the community than to academic achievement

(Bennett, Niswander, & DeLuca, 1996; Palmer et al., 2001; Sheldon, 1991).

Studies in both the US and UK that have explored aspects of inclusion,

including parental views of supports needed and barriers encountered, have revealed

variations in parental perspectives. Parents may lack knowledge of the services

available (Wesley, Buysse, & Tyndall, 1998), although intervention programs at

community level may redress these deficiencies (Buysse, Wesley, & Skinner, 1999).


Parents of typically developing children in inclusive schools have been found to hold

more positive views about inclusion than parents of children in non-inclusive schools,

and to believe that it was valuable to their child’s development (Diamond & LeFurgy,

1994; Guralnick et al., 1995; Miller et al., 1992).

Parents may have concerns about the quality of the special support available

and the possibility of rejection of the child by peers (Galant and Hanline, 1993;

Guralnick, 1994; Guralnick et al., 1995). They may have to fight for the provision

necessary, a task for which not all parents have the necessary resources (Petley, 1994).

Riddell, Brown, and Duffield (1994) found that middle class parents, either alone or in

liaison with voluntary agencies, were more successful at gaining extra resources for

their children than working class parents.

Concerns about inclusion also involve its suitability relative to the severity of

the child’s disability, age, and whether the education of typically developing children

will be affected (Palmer, et al., 2001; York & Tundidor, 1995). Children with behavior

problems seem to be rejected more often and their parents are aware of the drawbacks

of inclusion for them (Guralnick, 1994). Since children with SSLD frequently

experience additional problems with behavior, there may be similar drawbacks for this

population (Botting & Conti-Ramsden, 2000; Lindsay & Dockrell, 2000).

The age factor is relevant to both the language and educational needs of

children with SSLD. Speech and language therapists (SLTs) in the U.K. typically

concentrate on the pre-school and primary (elementary) age range (Lindsay, Dockrell,

Mackie & Letchford, 2002). The nature of the primary curriculum and classroom

practice facilitates the delivery of in-class support either by the SLT or by the teacher

under their guidance. Speech and language therapists in the U.K. are developing in-

school practice that facilitates program delivery within inclusive settings. As


curriculum demands change in later primary school, it is more difficult to integrate

therapy with teaching (Law et al., 2002).

Parents recognize that the philosophy of the school and the attitudes of

individual teachers involved are important for successful inclusion (Bennett et al.,

1997; Bennett, et al., 1996; Erwin & Soodak, 1995; York & Tundidor, 1995).

However, parents and teachers do not necessarily agree on the benefits of inclusion

(Bailey & Winton, 1987; Wesley et al., 1998). Seery, Davis, and Johnson, (2000)

reported that despite much apparent similarity of views between parents and

professionals, a finer grained analysis revealed important divergences. For example,

twice as many professionals as parents provided only a conditional affirmative

response to inclusion continuing. In addition not all parents want inclusion for their

child (Grider, 1995). In England, there were more parental appeals to the Special

Educational Needs Tribunal against local education authorities which refused to grant

a “special” rather than “mainstream” school place (Special Educational Needs

Tribunal, 2000).

Many parents of children with special educational needs recognize that not all

parents want the same type of education for their child. They would like to be

presented with facts by supportive professionals and to be able to make a choice of

education based on that information (Erwin and Soodak, 1995; Hewson and Sisson,

1996; Stokes, 1993). The complexity of the perspectives of parents of children with

and without disabilities is evident from a review of 17 studies by Duhaney and Salend

(2000). Where parents place a higher priority on socialization they tend to favour an

inclusive education setting, while parents who are more concerned with academic

goals tend to favour the availability of a continuum of services (Palmer, Borthwick-

Duffy & Widaman, 1998).


Parents exert influence on their children’s development both directly through

their own parenting behavior and indirectly through the decisions they make about

their child, including schooling. Consequently, enhancing effective parental

involvement, in both modes, is one means of optimising the development of children

with disabilities.

Bronfenbrenner’s ecological systems theory (1979, 1992), provides a useful

model for conceptualizing the factors relevant to helping children with developmental

difficulties, including parents and schools (Granlund & Roll-Pettersson, 2001; Sontag,

1996). It stresses the inter-connectedness, and hierarchical arrangement of four

systems: micro-, meso, exo- and macro-systems. There is no single focus on child

deficiencies or the environment as explanations of poor development. The model is

transactional and complex in that child and systems affect each other. The dimension

of time in the changing pattern of interactions and nature of children’s development

has also been recognized (Lindsay, 1995). A concept of particular relevance here is

that of “environmental niches” which are “particular regions in the environment that

are especially favourable or unfavourable to the development of individuals with

particular personal characteristics” (Bronfenbrenner 1992, p. 194). This has relevance

both to consideration of inclusion and to the particular aspect of parental involvement.

Parents’ perspectives, support and understanding can enhance the match between the

child’s characteristics and the environmental niche. Their perspectives may include the

perceived benefits and disadvantages of different types of education and therapy

provision, while parents may also act as practical interfaces between other

professionals and the child with respect to identification, assessment and intervention

(Roffey, 1999; Wolfendale & Bastiani, 2000). Parents also have perspectives, as

consumers, of the operation of education and healthcare systems, and of their


interaction. Finally the values, laws, customs, and resources of a particular culture

provide the context for parental perspectives on issues such as the philosophy and

nature of inclusive education, and on the laws and support mechanisms, including

financial priorities, which support it.

Public schools in the U.K. operate within local education authorities (LEAs)

which have statutory duties for the assessment of children with special educational

needs (SEN) and making provision to meet those needs. Similarly, health care

including speech and language therapy is provided by health trusts. Children

considered to have special educational needs will be entered on the school’s SEN

register and have an individual educational plan (IEP) devised by the teacher. Where a

child has more substantial and persistent SEN professionals from outside the school,

including SLTs and educational psychologists will contribute to the IEP. Where a

child is considered to have severe and complex SEN, a statutory multi-professional

assessment is conducted, to which the parents must be invited to contribute, and the

child may be made the subject of a statement of special educational needs. The

statement specifies the provision that must by law be made to meet the child’s special

educational needs, and lays the foundation for the development of further IEPs

(Huefner, 2000). This status is applied to about 3% of school pupils, over half of

whom attend mainstream schools. There are now very few residential schools for

children with SEN; these are mainly for low incidence disabilities and often run by

voluntary bodies.

This study adds to previous work by its focus on children with specific speech

and language difficulties (SSLD) and in particular on their parents’ perspectives. The

research combines both qualitative and quantitative methods, using each to cross-

validate the other. The special educational needs system in the U.K. does not require


diagnostic categories; SSLD and SLI are both commonly used by practitioners to refer

to children with primary language problems (Lindsay et al, 2002). Although their

nonverbal intellectual ability is normal and they have no major sensory impairment,

these children have substantial language impairment, typically in both expressive and

receptive language domains. This group of children is particularly interesting because,

by the nature of their problem, they bring together professionals from both health

(speech and language therapy) and education. Also, their communication difficulties

are typically not identified until they are 2 years or older. However, there is evidence

of a mismatch in the understanding of these children’s problems and their requisite

needs as indicated by speech and language therapists and educational psychologists

(Dockrell, George, Lindsay, & Roux, 1997) and gaps in teachers’ knowledge and

expertise to meet the children’s needs (Dockrell & Lindsay, 2001). This study

provides evidence on parental perspectives regarding the effectiveness of inclusive

education. This is explored as a wider system issue, beyond the school alone, to

include education and health services provision. It goes beyond the examination of

each to address the integration of services.

Method

The present study was part of a longitudinal study conducted in two local

education authorities (LEAs) and two regional special schools for children with severe

speech and language difficulties in the UK. One LEA is a large urban community in

the north of England with one health trust, population 531,000; the other spans two

health trusts and covers both rural areas and a series of small towns, population

599,000. This project focused on a group of 69 children with specific speech and

language difficulties (SSLD) selected when they were in Year 3 (about 8 years). An

initial survey of all educational (school) psychologists, speech and language therapists


and schools’ Special Educational Needs Coordinators in the two LEAs identified 133

children with SSLD, from whom a subsample of about 30 from each LEA was

derived. The 59 selected children were supplemented by 10 children with SSLD

attending regional special schools. There were 52 boys and 17 girls, a gender disparity

typical of that found in samples of children with SSLD (Leonard, 1998). All children

were on their school's special educational needs register, and 54% had a statement of

special educational needs under the Education Act 1996. The children had

substantially delayed development on a number of language and educational measures

which ranged in mean age scores from 4 years 4 months to 6 years 1 month at mean

chronological age of 8 years 3 months (Dockrell & Lindsay, 1998). The longitudinal

study, using a mixed methods design, has examined the nature of the difficulties,

including language and literacy, experienced by these children and the services

provided to meet their needs. The present study of parental perspectives complements

an investigation of the perspectives of the children’s teachers (Dockrell & Lindsay,

2001).

Qualitative methods have become established within educational and

psychological research (Miles & Huberman, 1994; Denzin & Lincoln, 2000), and

more recently within special education (Bailey et al, 1999; Grove & Fisher, 1999;

Palmer et al, 2001; Seery et al, 2000; Wesley, Buysse, & Tyndall , 1997). The use of

individual and group interviews and focus groups allows a more flexible approach to

data gathering, and provides the potential for richer information, which may extend the

scope of the study beyond the original research questions (Anzul, Evans, & King,

2001; Pugach, 2001). Qualitative methods also represent a different epistemological

approach, treating the participant as a partner, providing an interchange of views

between two or more people, and emphasising the research as socially situated (Lewis


& Lindsay, 2001). However, the quality of research using qualitative methods has

been criticized, including analyses sponsored by government agencies in the UK

(Tooley & Darby, 1998). To address the limitations of both qualitative and

quantitative methods a number of researchers have used a mixed methods approach,

tailoring methods to different types of question within the research design (Bennett et

al., 1997). The present study primarily used qualitative methods supplemented by data

from teacher-completed rating scales and standardised assessments.

Participants

Participants were the parents of 66 out of 69 children who agreed to be

interviewed. The parents had 21 children attending special schools (10 residential, 11

local) and 45 in mainstream. All children in special schools had active speech and

language therapy involvement, as did 5 of the 6 children in mainstream schools with

designated special provision, and 70% of those integrated individually into

mainstream schools. The nature of this varied with intensity being greatest in special

schools that had speech and language therapists on the staff, working with teachers

and providing direct therapy. Those in mainstream schools received therapy from

visiting therapists, typically no more than once a week and often much less frequently.

The majority of interviews were carried out with mothers only (73%). In 21% of the

interviews both parents were present. The four remaining interviews occurred with the

father alone (n=2) or mother and grandmother (n=2).

Measures

The present paper focuses on the parental perspectives as gained at interview

(see Procedure), but also draws upon the results of the standardized questionnaire

completed by the parents, the Strengths and Difficulties Questionnaire (SDQ), a

revision and extension of the Rutter parent and teacher questionnaires (Goodman,


1994, 1997). The SDQ comprises five scales: emotional symptoms, conduct problems,

hyperactivity, peer problems, and prosocial. Each scale comprises five items which are

marked “not true”, “somewhat true” or “certainly true”. Each of the five scales can

result in a score from 0 to 10. The scores of the first four scales can be summed to

produce a total difficulties score (range 0-40); the prosocial scale provides a separate

score for positive behavior. Goodman (1997) has presented evidence for the

concurrent and predictive validity of the SDQ as well as standardization data for the

cut-offs for each scale and the total difficulties score to indicate children as likely

psychiatric “cases” with 80% “normal”, 10% “borderline” and 10% “abnormal” in

each case. Further information on the relationship between parent- and teacher-

completed SDQ, together with measures of self esteem, language and attainment are

presented in Lindsay and Dockrell (2000).

Procedure

The parents were sent the SDQ by post about two weeks prior to the visit to

their home by one of the two junior researchers to conduct the interview. The

completed questionnaires were collected after the interview had concluded.

The parents’ views of their children’s development were obtained by open-

ended semi-structured interviews. A schedule of major topic areas was devised by the

researchers from a review of the literature and pilot interviews with parents of children

with SSLD who were not part of the current cohort. The development was aided by the

project’s steering group which included a representative of the main voluntary body

for parents of children with language difficulties in the UK (Afasic). Main topic

questions were supplemented by probes, which were used if information was not

produced spontaneously.


The parent interview focussed on the following areas: identification and

assessment of the child including their primary and secondary needs, the child in

relation to their peers and siblings, strengths and difficulties across the curriculum,

school life and home life including social relations, self esteem, what the child likes to

do, extra support provided in school, professionals involved with the child, their

relationship with the child’s schools and professionals, thoughts about the child’s

future and the optimal provision for him/her, and thoughts regarding their experiences.

Parents were introduced to the interview by the researcher noting that the project

was considering children with a wide range of difficulties, from those who have a few

problems to those with many and severe problems. The interviewer then explained that

as parents know most about their children, we would be speaking to them as the first

step in the project. They were asked for permission to tape the interview, and were

assured that all information was confidential and that neither they nor their child

would be personally identified.

Interviews were undertaken in the parents’ homes and typically lasted about 1

to 1½ hours. The interviewer took the lead from the parent allowing them time to talk

about their own experiences and salient issues related to each area. These issues serve

as the means of organizing the results.

Interviews were transcribed by the researcher who carried out the interview.

The authors read the interviews to develop an initial coding frame based on the

interview questions. The junior researchers, who had degrees in psychology, coded the

interviews using the ATLAS/ti programme for computer-based qualitative interview

analysis (Muhr, 1997). The authors, junior researchers and a third, independent

researcher with a degree in Child Development, read all the interviews to develop a

revised set of codes with 5 main issues and subcategories. The 5 main issues were: the


child’s special educational needs, the initial identification of the child’s problem, the

type and quality of the support their child was receiving, the wider impact of the

child’s difficulties on the family, and their hopes, plans and concerns for their child’s

future. There were subcategories for each issue, e.g. ‘views on their child’s special

educational needs’ included the following subcategories: difficulties with language,

literacy problems, behavioural difficulties, social relationships (where a positive peer

relationship subcategory was also included), attention and hyperactivity, and acting

out behaviour. The junior researchers coded all interviews for the issues and

subcategories; both of the authors read a 10% sample of the interviews and interrater

agreement on subcategories was 92%. The subcategories were used in reporting the

results.

Results

In this section we report the emergent issues together with indications of their

frequency and comparisons between the parents of children in mainstream and special

schools. Where appropriate results from the Strengths and Difficulties Questionnaire

(SDQ) are also reported using chi square to compare the distribution of scores

(normal, borderline, abnormal) with the 80:10:10 ratio expected from the

standardization (Table 1).

<Table 1 about here> Parents’ Views of their Children’s Special Educational Needs

Parents were aware of the children’s language difficulties and a range of other

needs that their children experienced. Eighty-five percent recognized their child’s

primary problem was with language, while a minority considered this secondary to


other difficulties. Over half the parents also highlighted literacy problems that were

confirmed by conventional reading measures (Dockrell & Lindsay, 1998; 2002).

Behavioral difficulties were reported by over one-third of parents, similar to the 37%

who rated their child “abnormal” on the total difficulties score of the SDQ, a

statistically highly significant difference from the expected distribution χ2 (2, N = 60)

= 61.85, p < .001, Effect Size Index w = 1.02, representing a large effect (Cohen,

1998). The difficulties identified at interview comprised several sub-categories

indicating the complex nature of the impact of communication difficulties on this

domain.

There was variation in the parents’ perceptions of the children’s social

relationships as evidenced by the interview and SDQ data. A quarter (27%) identified

problems at interview, characterised by the comment “I just wish she could make

friends, - she’s on her own all the time”. A higher proportion (46%) rated peer

problems as abnormal on the SDQ (Table 1). However, many of the children were

reported at interview to be positively involved in friendship groups both at home

(41%) and school (59%). Of particular interest with respect to inclusion, similar

proportions of parents of children in mainstream and special schools (over 80% in

each case) reported that there were no negative aspects concerning friendship groups

in school.

The SDQ tended to highlight problems by the specific nature of the questions

asked. For example, bullying was not raised specifically at interview but 22% of

parents reported on the SDQ that it was ‘certainly true’ that their child was bullied and

27% that this was ‘somewhat true’, but with no difference between mainstream and

special school. At interview, however, parents discussed their child holistically with

positive comments as well as those expressing concern. Strengths were also reported


in prosocial behavior as indicated above; indeed, this was the only scale on the SDQ

where there was no statistically significant difference compared with the

standardization sample, χ2 (2, N = 64) = 2.02, p = .37.

The next most frequently reported concerns during the interviews were about

attention and hyperactivity (26%), and with acting out behavior (23%): “He is very

hard to make sit still” and “His concentration is poor.” Concerns about concentration

and attention were also revealed, and more frequently, by the SDQ, where 45% of

parents rated their children as “abnormal” on the hyperactivity scale, statistically

significantly above the expected rate compared with the standardization sample χ2 (2,

N = 65) = 89.31, p <.001, Effect Size Index w = 1.17. Parents also noted concerns

about acting out behavior with 37% rating conduct problems abnormal on the SDQ,

χ2 (2, N = 66) = 57.81, p < .001, Effect Size Index w = 0.94. In each case the effect

size is large. The latter domain was typically presented as either a result of the child’s

communication difficulties: “He used to get angry because he couldn’t get his words

across” or as a comorbid characteristic: “He’s got a temper and if he can’t express

himself sometimes it shows itself that way.”

The children in mainstream (M = 6.45, SD = 2.62) were rated as having

statistically significantly more problems with hyperactivity on the SDQ than children

in special provision (M = 4.82, SD = 2.17), t (65) = 2.57, p = .013 (two-tailed), d = .70.

The mainstream children (M = 3.23, SD = 2.33) were also rated as having more

conduct problems on the SDQ than children in special provision (M = 2.09, SD =

1.60), t (66) = 2.05, p = .044 (two-tailed), d = .58. Finally, the children in mainstream

(M = 17.00, SD = 7.57) were rated statistically significantly higher than children in

special provision on the SDQ total difficulties score (M = 12.76, SD = 4.89), t (60) =

2.63, p = .011 (two-tailed), d = .68.


Both the interviews and SDQ indicate that this sample of children with SSLD

have a range of comorbid difficulties, including high levels of hyperactivity, poor

concentration and impaired peer relationships, in addition to the expected language

and educational problems. The greater prevalence of these problems in mainstreamed

children raises important questions about inclusion, including whether failure to meet

their language and educational needs was resulting in these behavioural difficulties.

The use of both methods has furthermore not only produced cross validation but also

useful complementary information: the SDQ focussed parents on specific

characteristics and difficulties while the interview facilitated a more holistic

representation of the child, including positive features.

Initial Identification of the Problem

The second issue concerns identifying developmental difficulties during early

childhood. Parents reported having played a key role in identification, but this had

often been a frustrating process. Almost half (47%) reported that they were the first to

notice a problem. Parents were acting on their own suspicions that something was

wrong, often influenced by knowledge from family history. A quarter (25%) reported

either a parent or a sibling having some form of speech or language difficulty: “It runs

in the family so we picked it up” (mother) or “I went to a speech therapist when I was

a young chap for stuttering when I was about five” (father).

Professionals were often seen as dismissive, telling parents to come back later.

This could happen more than once and so result in a very lengthy process, in some

cases delayed until the child was attending nursery school (kindergarten): “My only

grievance is that things didn’t happen sooner” and “We went to the child development

unit, they said he was just fine.” There was also concern that nursery had not noticed

anything wrong: “I think nursery should have picked up on it.”


These findings indicate the importance of parents in early identification, but

also highlight the need for partnership. Parental expertise may be enhanced by

previous experience with an older child. Optimal identification processes require the

joint involvement of parents and professionals in partnership, with professionals

prepared to address parental concerns positively.

Meeting the Child’s Needs

The parents identified concerns about meeting their child’s needs which were

classified into seven categories. There were statistically significant differences

between parents of children in mainstream (n = 21) and special school (n = 45) in three

of these categories, all having implications for inclusion (Figure 1).

<Insert figure 1 about here>

Problems with placement were raised statistically significantly more often by

parents in special schools, χ2 (1, N = 66) = 8.63, p = .003, Cramer’s V = 0.33 which

accounts for 11% of the variance. These parents reported having to fight hard to secure

special school placement for their child. Such battles could be prolonged and

upsetting, as shown by these two parents: “It was me who campaigned his corner, who

fought, who wrote letters” and “I think there has to be a shake up down there, because

to go through the trauma you’ve got to go through for 18 months to get somebody to a

school…it was very distressing.”

However, securing the appropriate levels of support within the school was a

more frequent problem for mainstream parents χ2 (1, N = 66) = 9.47, p = .002,

Cramer’s V = 0.38, which accounts for 14% of the variance. Examples of concerns

include: “The plans are sound but they just never seem to get done”; “The school

would like to do more but have not the time nor the resources”; and “They said that he


needs specialised schooling really and they can’t offer it to him and I can’t offer it

because I am not a teacher.”

By corollary parents of children in mainstream provision were also more likely

to express concern about school-based problems including class size and school

organisation χ2 (1, N = 66) = 4.34, p =.037, Cramer’s V = 0.26 which accounts for 7%

of the variance.

Both groups were equally concerned about earlier problems with identification,

with 41% of all parents reporting such difficulties, financing of appropriate provision

(17%), and the time available for discussion and dissemination of information (18%

overall): “Unless we approach we don’t know anything.” Both groups also expressed

concern over frequent changes in speech and language therapist resulting in a lack of

amount and consistency of speech and language therapy. In addition, mainstream

parents felt that the child did not get enough expert help from SLTs, who were

reported to visit infrequently and leave work for the teacher or teaching assistant to do

with the child rather than undertake direct therapy.

These findings indicate different experiences, and battles for parents of

children in mainstream compared with special schools. Special school parents had

fought to gain these services against a system which was mainly based on inclusion.

Parents of children in mainstream supported this policy, but were unhappy with the

services actually provided for their children. A move to even greater levels of

inclusion will require attention to the level of service provided if parents are to be

satisfied.

Impact on the Family

The children’s special needs affected families in a range of different ways, in

some respects independent of the nature of the schooling. Communication difficulties


were one source of stress for parents: “I used to get really depressed, I used to find it

really hard trying to communicate with him…I couldn’t understand why we were like

we were.”

Impact on siblings was also mentioned, resulting from communication

difficulties: “He used to get very frustrated …if he couldn’t find the right words to ask

her [sister] to move he’d just get hold of her hair and drag her across the room”; or in

terms of being fair, as exemplified by a mother talking about her younger typically

developing child’s successes:

I didn’t want her to do it [succeed in a swimming assessment]. I was dreading

it in a way. It sounds awful because obviously I want her to do well but I just

didn’t want his confidence to be knocked either.

Residential schooling could be a problem: “I think it will be harder on his

brothers. Their brother is being sent away, and they are going to miss him.” However,

siblings were also a source of extra support: “She’s quite capable of telling them why

she’s screaming or why she’s doing that, she’s very good with her.”

Other impacts were related to the child’s schooling. Forty-seven per cent of the

parents reported active involvement in supporting their child’s language and learning

needs, the nature of which was partly determined by the proximity of the school.

Where the child was included into a local school, parents often visited and worked in

the school: “I used to go in and teach him every day.” Others worked with the child at

home:

She gave us things to do every night, trying to make him pronounce sounds

that he had difficulty with... We would have to get him to learn words. We

would do things like cut them out and put them on a bit of paper and we would


play cards with him…I would say to him what is that and sometimes he

remembered and other times he didn’t but that was all things we had to do.

This extra involvement might have repercussions on the child and family: “The

trouble is you end up doing so many things after school and you think 'poor child.’”

Parent support within the school could also have drawbacks:

Because we have to help him because he’s got learning difficulties, because we

go up to the school every day to help him at school, the other children say

‘why are your mum and dad here to help you? They shouldn’t be here’. And

that gets to him.

The need for guidance was also apparent: “We go through his folder with him

and that but I really don’t know how to do it properly.”

Having a child with SSLD had an impact on the family as a whole. This could

include difficulties within the family, with siblings for example, but the active

involvement of almost half the parents in the children’s education provides another

source of stress, as well as a potential for positive, collaborative action with

professionals. However, such practice needs to be collaboration based on knowledge

and expertise if it is to be effective. Parents have much knowledge but not necessarily

the skills to address some of their children’s problems. Unless professionals support

them in their work with their child parents can be exposed, unsuccessful and frustrated

as they struggle to devise effective educational interventions.

The Future

Parents also expressed their hopes, plans and especially their concerns for the

future. Once more these comments have relevance to inclusion. For example, 8 out of

10 of parents whose children were attending residential special provision saw the

child’s educational future in special schooling, and were preparing for future battles:


We know that after this September we will have to start fighting in order to

secure his place (for secondary school). I have already written to my barrister

in London saying that we will be starting this fight and if we need his services

…that is the only way we are going to do it.

The other two had a “dream” about their child returning to mainstream but

commented that this was not a “realistic option”. “Ideally it would be great if it all

came together and she could integrate into a normal school and be near home.

Realistically I see her being here until she is 16.” Parents of children in mainstream,

however, overwhelmingly wanted this to continue. Indeed only one parent with a child

in mainstream referred to a perceived benefit of special school: “If he went to special

school nobody could say anything about him being different.”

The main concerns for the parents of children in mainstream provision focused

on two issues. First, parents referred to their hopes for their child overcoming their

difficulties, whether with communication, social skills: “Well I hope her speech gets

all right, you know. I suppose it will eventually” or literacy: “If she could just learn to

read and write.” A number of parents of children in mainstream were concerned that as

their child became older they would be ridiculed and become more aware of their

difficulties, and that this would “get them down.” This could be aggravated by the

extra support provided:

I hope that … he won’t need it [extra help] because I think it is more difficult

for them when they are in big school if they are getting help from the other

kids. More so than at his age because I don’t think they realise when Y goes

off for help, but when he goes to the big school I think they do. So I am hoping

that he will be all right by the time he gets to big school.


Secondly parents hoped that their child could continue to attend mainstream

school and that levels of support would continue:

I know he probably won’t ever be able to catch up to their level but you know

at least if he can keep going and the school keeps having faith in him and don’t

hold him back again. That’s the only thing I’m worried about that after so long

they are going to say there is no more we can do for him he has got to back to a

special needs school.

The strong commitment to the current system by parents of children in both

mainstream and special schools poses a dilemma for policy makers. A move towards

greater inclusion will antagonise those parents whose children attend special schools,

and must also be supported by appropriate resources to meet the aspirations of parents

who support inclusion.

Discussion

This study described the perspectives of parents of children with specific

speech and language difficulties attending both mainstream and special schools,

including residential special schools. These views are considered with respect to the

role of parents in the education of children with disabilities and inclusive education in

particular.

The study is relatively small scale, with a sample size of 66 parents, and is

limited to parents of children with specific speech and language difficulties. However,

the sample was drawn from two different areas, one largely urban, the other a mixture

of small towns and rural, and represents a random selection of children with SSLD in

those areas. Also, the confidence that can be placed in the results is boosted by the

effect sizes for the analyses of Strengths and Difficulties Questionnaire data, and by

the consistency between the quantitative and qualitative evidence.


Legislation demands that parental views be taken into account in the U.K.,

U.S. and other countries. This is an issue of parental rights for involvement in

decisions about their child. However, the importance of parental perspectives goes

beyond rights to the efficacy of the operation of the system. These parents were key

figures in the initial identification of their child’s problems and had a sound

understanding of their children’s strengths and needs as evidenced by the concordance

between the parents’ perspectives and the standardised measures. The high level of

reported incidence among family members highlights the increased risk for children in

some families but also the possible sensitivity to identification by parents (Bishop et

al, 1999). However, the parents considered they were often not listened to, both at the

outset and later, and that they had to fight hard for appropriate support services or

entry to an appropriate school. Difficulties in identifying appropriate provision are

likely to reduce the early identification of favourable environmental niches to support

development. Thus despite these parents’ real concerns about the needs of their

children, early appropriate provision was often not forthcoming.

Perspectives of parents of children attending mainstream or special schools

indicate the complexity of the inclusion issue. This is often presented as a question of

rights but, as Lindsay (1997) has argued, that is insufficient. Both the surmounting of

barriers and the efficacy of the education provided must also be considered (Buysee,

Wesley & Keyes, 1998; Manset & Semmel, 1997; Mills, Cole, Jenkins, & Dale, 1998).

Inclusion may be in tension with another important value, the promotion of informed

choice. Many parents in this sample felt ill-informed about the ways in which their

children’s needs were being met at school. There was a clear division with respect to

inclusion between parents of children in mainstream and those in special schools, with

each favouring the type of provision currently attended by their child.


The development toward a system of total inclusive schooling would remove

the right of choice from parents who seek special education. A further dimension,

however, is efficacy of the education provided. The majority of the mainstream

parents wanted their child to continue in mainstream, but many were concerned that

the support provided was inadequate. Parents of special school children had often

battled to gain a special school place but were now content with the amount and nature

of support made. Hence, while there is less adequate support in mainstream there will

be a dilemma for parents, requiring them to choose between the inclusive ideal of

mainstream and special school provision that they consider to offer better resources to

optimise educational progress

For parents of children with speech and language needs a further factor is the

provision of speech and language therapy. Mainstream parents were concerned about

both its amount and the type of delivery. In special schools speech and language

therapists worked on site and could collaborate on programs. In mainstream, however,

a consultation model of practice had been developed with SLTs advising teachers.

Many parents were suspicious of this lack of direct therapy, a method which is

appropriate for 8 year old children with severe speech and language difficulties, a

concern also reported in a national study of speech and language needs in the U.K.

(Law et al., 2002). At present, too little is known about teachers’ implementation of

interventions following consultation (Noell & Witt, 1999). Parents also had concerns

for the future. In general those in special provision viewed continuation as a realistic

option while those in mainstream had serious doubts about the support available at

secondary school (usually attended from age 11 years). This diversity of opinion

indicates the complexity of parental views on inclusion and in particular the different

bases of opinions. Some parents emphasize value positions concerning normality,


while others give higher priority to improving language and educational abilities

(Palmer, et al, 1998).

The present study extends the evidence previously available on younger

children and those with either severe developmental delays or learning disabilities,

reporting the perspectives of parents of children with specific speech and language

difficulties at about 8 years, in their fourth year of compulsory schooling in the

English school system. The children’s difficulties were not obvious at birth nor in the

early months, unlike children with severe and profound sensory, physical and

intellectual developmental impairments. Their problems are not limited to speech and

language, however. This group is at risk of significant educational, social and

behavioral difficulties (Bishop, 2001; Lindsay & Dockrell, 2000; Lindsay, Dockrell,

Letchford, & Mackie, 2002; Tomblin, Zhang, Buckwalter, & Catts, 2000). They

require programs that address both educational and speech and language therapeutic

goals.

Regarding parents as partners has been an increasingly important cornerstone

of British government policy (e.g. Department for Education and Skills, 2001) and

professional practice. However, there are several models of partnership. The current

study questions the rhetoric of parent partnership from identification to provision.

Parents were certainly involved in identification but decisions on the nature and extent

of the provision generally remained the domain of professionals unless parents were

prepared to fight for what they felt was appropriate; interestingly, these tended to be

parents seeking a special school place. Parents were also concerned about the time

taken to assess and decide on provision. Under these circumstances, the concept of

partnership, whatever the good intentions of professionals and managers, becomes

strained. This is partly a matter of communication and partly results from real conflicts


in the system, including financial priorities. True partnership requires more creative

and effective approaches (Buysse, Wesley, & Skinner, 1999; Law et al, 2000).

Parents have an important role in mediating the development of children with

developmental difficulties. Bronfenbrenner’s ecological systems theory provides a

useful approach to conceptualising their involvement and the present study provides

evidence at each of the four levels. At the microsystem level parents contribute directly

to intervention programs, both at home and at school. They also experience and can

report on the interaction of the child’s difficulties with the family. Parents are also

involved in the mesosystem where their concerns about the implementation of

inclusion by schools and speech and language therapists, including the latter’s

consultation model, provide important evidence. When professionals decide to change

working practice because they consider the new method to be more effective and/or

efficient, they need to gain the support and understanding of key stakeholders, in this

case the parents. At the level of the exosystem parental perspectives provide important

information to guide local strategic policy formation and implementation for the

education and health systems. Finally, at the macrosystem level, parents’ perspectives

on the working of support systems, including inclusion, provide relevant and

important information to influence value systems and national laws. The determination

of some parents to continue to have their children’s needs met in specialist provision is

an important message for policy makers.

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Table 1

Parents’ ratings of their children on the Strengths and Difficulties Questionnaire

% Normal

% Borderline

% Abnormal

Emotional symptoms

63.1

4.6

32.3

Conduct problems

47.0

16.7

36.4

Hyperactivity

43.1

12.3

44.6

Peer problems

40.0

13.8

46.2

Prosocial

84.4

4.7

10.9

Total difficulties

41.7

21.6

36.7

Note. N = 66


Figure Captions

Figure 1.

Percentage of parents with children in mainstream and special provision who

identified problems in meeting their child’s educational needs.

Whose job is it? Parents concerns

38

Figure 1.

0

10

20

30

40

50

60

70

Identification Finance Placement Professionals Support School-based Information

perc

enta

ge

Special provision n=21 Mainstream n=45

.

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Whose Job Is It?: Parents' Concerns About the Needs of Their Children with Language Problems

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